Support Seeking on Social media after Sustaining a Spinal Cord Injury

We all use some kind of social media. Yes, that’s all of us!

Now, take a moment to think about it: we probably ask many questions on those online platforms regarding various aspects of our day-to-day lives, including jobs, restaurants, places, or even stressful situations. But how might support-seeking look if a person faces a sudden transition that changes their life abruptly?

For example, sustaining a Spinal Cord Injury (SCI) is a sudden transition, and is one of the prominent causes of motor disabilities. According to the level of injury people need to use different types of assistive tools, such as a walking cane, a walker, manual wheelchairs or with severe injuries people need to use powered wheelchairs. Online social spaces often facilitate people’s expressions of distress and challenges associated with traumatic life incidents. Thus, we want to know what people with a SCI discuss in the online social space to adjust to this changed life.

Our primary goal in this study is to gain holistic insights into the social media support dynamics of individuals with an SCI. We conducted content analysis on around 1000 post-and related comments from two SCI-specific subreddit groups. While collecting data from Reddit, we did not directly interact with any of the users of this subreddit group. Our fundamental analysis was focused on the publicly shared text of the posts.

We identified 13 broad topic categories being discussed in the subreddits, covering many topics beyond health or motor impairments. That includes, travelling , transportation, new self-care activities — -like bladder management, pain management, pressure relief — -, mental health, sexual function, relationship etc.

We also found that individuals participate in posting irrespective of the level of injury or the time elapsed since injury!

We found that people sought information on: (1) new assistive tools and logistics, (2) changes in health and motor functionalities, (3) adjusting to new self-care routines, and (4) readjusting to activities of daily living (ADLs). For instance, individuals with an SCI frequently asked about various assistive tools. Typically, they receive initial training and information on assistive technology from a rehabilitation hospital immediately after their injury. However, access to professional support for assistive technology is often limited after discharge. They also need to relearn technologies, such as using mobile phones with voice control, driving with assistive tools, or typing with smart keyboards.

People also seek emotional support for motivation, hope, positivity, self-image, independence, and improving relationships. For example, sustaining the injury dramatically impacts their relationships with family, friends, and significant others. This includes losing partners or friends, primary caregivers becoming frustrated, and family members frequently expressing excessive expectations of recovery. Consequently, individuals seek empathy and guidance on how to create new intimate relationships (e.g., on dating platforms) or improve existing ones.

Overall, we found that informational support-seeking posts in subreddit groups received comments with various forms of informational support and a small amount of emotional support for each category of posts. Additionally, we observed that emotional support-seeking posts also received informational support in addition to emotional support. However, compared to posts seeking motivation, posts regarding self-image, independence, and improving relationships received less emotional support.

Our work offers several contributions. For instance, individuals heavily rely on Reddit for support in choosing assistive tools, career paths, education pathways, and relationships at different stages, mostly to redefine their identity. Additionally, self-efficacy is crucial in adopting and learning new technologies, as negative experiences can reduce self-efficacy. Social media can support assistive technology adoption by reinforcing self-efficacy.

Finally, we identified a gap in fostering emotional assistance for post-SCI trauma and uncertainty. We suggest implementing technology-based solutions, such as AI-supported comment prompts, to offer more meaningful emotional support to individuals adjusting to post-SCI life. Social media could also facilitate access to trained peer mentors, counselors, or therapists in real-time, helping users with destructive thoughts or emotional struggles. The system could detect such posts and connect users to immediate support. Additionally, relevant success stories could be used as inspirational tools for users seeking emotional support.